Adapting to life with schizoaffective disorder (part 3) – symptoms

I didn’t know what to expect. Deep down I had suspected that it was schizophrenia, but getting confirmation from my doctor made it real. I was scared. None of the stories I knew about schizophrenia ended with someone being symptom-free. I sat in the car after my doctor’s appointment with my head spinning. Were the hallucinations going to get worse? Was I going to become delusional? Would I largely lose touch with reality? At that moment, I decided that that was not going to happen to me. It was more denial than anything else, but I had my mind set on it. I was not going to lose my life to schizophrenia.

The hallucinations I had and the delusions I feared were just a small sample of the symptoms I faced. Schizoaffective disorder comes with several different types of symptoms – mood symptoms (depression in my case), positive symptoms (something that is there that shouldn’t be, like hallucinations), negative symptoms (things that are not there that should be, like not exhibiting emotional responses), and disorganized symptoms (which are pretty much what they sound like).

In the beginning

For me, identifying what was real and what was not was usually pretty easy, even from the get go. But that didn’t make the hallucinations less frightening. For most of the first year of my disorder, my hallucinations consisted of recurring visual hallucinations of a non-threatening cat and some definitely-threatening people looking in my windows. There were also a host of sounds ranging from music to footsteps. Sometimes it was easy to ignore them and other times it was more difficult. I often kept quiet about them at home because I didn’t really know how to talk about them with anyone but my doctor.

In college, I wanted to believe that I was symptom-free and safe from the clutches of schizoaffective disorder, my updated diagnosis. I wrote off the cognitive issues that come with schizophrenia as something that would always be there, not a symptom. But despite my determination that I was symptom-free when I wasn’t experiencing episodes, I kept finding myself in social situations where I would say something, but it wasn’t what I meant. Or I would get anxious because I was worried I wasn’t making sense. Or in arguments where my mind would go blank and I couldn’t respond.

The symptoms

These were the disorganized symptoms, which are, to this day, the most frequent symptoms I experience. And I’m okay with that. On a day-to-day basis, they aren’t as severe as they were during episodes. At home, I’m able to be open about what’s happening in my head, but it still causes frustration. I’ve learned to try taking a step back and sometimes make a list to organize my thoughts. They still give me anxiety when interacting with others though.

On rare occasions, I also experience negative symptoms like speaking very little and losing motivation to do even basic things like brush my teeth. In the past, I’ve given in to theses symptoms. But I’ve learned that I feel better when I keep up with hygiene and my daily routine, even if I have to force my way through it. That’s become my tactic for many negative symptoms, though it’s very difficult sometimes. No motivation? I find small tasks to complete. Poverty of speech? Say something. Anything. Even if it’s just one word. Not taking pleasure in things? Keep doing the things you loved anyway. These tactics don’t always work, but sometimes there’s not much more I can do. I always talk to my doctor about them though.

When stress levels rise

Under high levels of stress, I can have auditory, tactile, and visual hallucinations  or delusions, like being concerned that people might be able to hear what I’m thinking. In the beginning, I would internalize everything. However, I’ve learned to deal with them by seeking confirmation, be it talking about it or investigating myself.

I’ve spoken to my boyfriend about delusions and hallucinations during times where I’m experiencing them. It’s difficult and awkward, but I do feel better when I get his take on things. And, if I can, I will go look for the source to prove it doesn’t exist. It can be terrifying, but this helps me feel more in control. However, there are instances where there’s nothing I can do but remind myself that it isn’t real. Which isn’t always comforting. But I always talk to my doctor about any symptoms so we can figure out how to tackle them.

Living with my symptoms

While severe symptoms aren’t frequent, I’m not entirely symptom-free. So how do I handle that? It’s complicated. Some of it is being able to identify symptoms. Some of it is taking control like investigating sources. And some of it is just getting used to it, like with the cognitive issues and disorganized symptoms. It’s a lot of accepting that this is how things are now, and reminding myself that that’s okay. Things could be much worse. I’m thankful for my ability to live primarily with only residual symptoms and to have the tools, both medication and otherwise, to deal with the rest. Though life doesn’t look the way I thought it would prior to my diagnosis, it doesn’t look the way I feared it would either. I kept my promise to myself – schizoaffective disorder has not taken my life. And I don’t plan on changing that.

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